SUDEP

Sudden unexpected death in epilepsy, SUDIE, epilepsy-related death

What is SUDEP?

SUDEP (sudden unexpected death in epilepsy) is a rare complication of epilepsy that is linked to poorly controlled seizures. It usually happens during sleep and in many cases no cause is found.

Although this can sound worrying, the risk is very low for people who manage their seizures well.

What causes SUDEP?

The cause of SUDEP is unclear, although it has been linked to changes that happen during a seizure. These include:

  • Changes to breathing patterns, which can affect oxygen levels in the body.
  • Changes to heart rate, making it harder for blood to circulate as it should.
  • Temporary changes to how the brain controls breathing and heart rate.

Are there any warning signs of SUDEP?

SUDEP usually happens during or shortly after a seizure, often while asleep. It doesn’t have warning signs in the way some other conditions do. This is why taking medication regularly is really important.

SUDEP is rare, affecting around 1 in 1,000 people each year and most people with epilepsy will not be affected.

Support for families and loved ones

Life after the loss of a loved one can be overwhelming, but you don’t have to face it alone. There is no right way to process times like these, but we’re here alongside you.

Our counselling services help support families affected by SUDEP, guiding you through one of life’s most difficult times.

Our trained bereavement counsellors can offer advice, emotional support and a safe space to talk, helping you come to terms with your loss.

There is no timeline for healing – your journey through grief is yours alone. Whether you are seeking support in the early days following bereavement, or are finding grief difficult to carry long term, our counsellors are here to listen without judgement, at a pace that feels right for you.

Looking to talk to someone?

Woman smiling, making eye contact and holding the hand of another woman to comfort her

Phone us

Contact The Brain Charity now

Our friendly Information & Advice Officers are here to help.

0151 298 2999

Looking to talk to someone?

  • Please tell us which neurological condition you are affected by and what you need support with.

Remembering a loved one

Share their story

Every life leaves a lasting impact on the people around us. Sharing memories can be a meaningful way to reflect on the person we’ve lost and the moments that made them special.

Our online memorial page is a place to remember and celebrate loved ones who are no longer with us. Families and friends can share photos and messages, creating a lasting tribute to the person who continues to mean so much.

Turn love into lasting change

Some people choose to honour someone special by raising funds to support our vital work, spread awareness and make a real difference to our charity and those supported by it. For many, this can bring a sense of purpose during an incredibly difficult time.

If you would like to find out more, visit our fundraising page for ideas on how your loved one’s legacy can live on through the lives you help to change.

Other resources

Support groups

SUDEP Action

SUDEP Action hold coffee mornings throughout the UK for those that have lost loved ones.

Find your nearest group here.

Support groups at The Brain Charity

Are you interested in setting up a SUDEP support group, or do you already run one?

Email activities@thebraincharity.org.uk to let us know.

Alternatively, you can check out our list of related support groups here.

Other charities

SUDEP Action

Cruse Bereavement Support

Website: www.cruse.org.uk

Phone: 0808 808 1677

Find support through regular newsletters with advice on dealing with bereavement. Sign up here

Social media: Follow Cruse on Facebook